Sunday, May 31, 2015

I've Been Diagnosed With...

One of the stranger challenges of living with a brain injury, that no one talks about, because no one can identify it, is that we become a complete mystery to ourselves. So much is wrong with us, it is like a big tangled web of yarn, one piece indiscernible from the next, with no way to make sense of the mess. Someone without brain issues would be incapable of figuring it out; but we get the added challenge of the thick cognitive fog. 

Unable to figure out ourselves, we rely heavily upon our doctors to explain "us" to us. We are thus more susceptible to believing what our doctors say. 

Then countless doctors tell us nothing is wrong with us, perhaps because they do not have the tools to see it. They lead us to believe we are crazy or lazy. So we become ashamed of our inabilities; sensing no other option but to hide our heads in the sand for the rest of our lives. Somehow, doctors so often add to our tangled TBI mess of yarn, making us more confused and depressed. This is a big topic in support groups. Painfully familiar, it seems we all have the same doctor. 

I am a mental health professional and an emotionally healthy person. And I am about to make some scary disclosures. For all of us, this story needs to be told. 

I really wanted to know why after four years of working with my state’s vestibular specialist, I have "the most persistent case of dizziness"she has ever seen, and nothing is helping. Motion can still feel like it shakes my brain into a million pieces and renders me useless. I wanted to know why I now spend my life trying to figure out how to empty a dishwasher with as few heads turns as possible before I have to rest. I wanted to know why I have to sit still for several hours each morning before I can use my eyes, read, ride in a car, or move. Anyone who thinks I want to lay on a couch and watch TV with my life, does not know me. 

I wanted to know why my eye constantly hurts so badly and feels as if the ligaments are being pulled out of place and can not tolerate light. Why does everything appears to bounce? Why did I spend 3 years seriously wishing I were blind because my vision made me so horrified, sick, unable to move, and brain fatigued? 

The first neurologist I saw told me “Nothing is wrong with your brain. You just have anxiety problems". That is why you could only name 6 words that start with “F”". (He might be anxious too if that were him.)

After my first four hour neuro-opthamological (brain/vision) exam, the doctor said ""You just need eye drops, your eyes hurt because they are dry." Huh?! He continued, "There is nothing wrong with your eyes.”    I asked “It's the brain part of vision where the problems lie, isn't that why I am seeing a neuro-opthamologist?” His reply? “Well, there is nothing we can do about the neuro part.” (I'm confused. Then why did I just waste four traumatizing hours?!) 

The second neuro-opthamologist said "You have 20/15 vision. There is nothing wrong with your eyes. I would kill to have your vision".  (Honestly, I was ready to kill myself because of my vision.)

The next one said "You should learn to meditate". (I have meditated and practiced yoga for 30 years. I have taught meditation. I can't move and feel like I just spent 5 years on meditation retreat. He was talking to the wrong person.)

All of these docs were adding insult to injury. The problem is, that we have brain injuries. We believe our doctors. Without the ability to think critically, we are left more confused than ever. 

The fourth out-of-state neuro-opthamologist said “You have a damaged optic nerve, possibly causing the severe eye pain. Oh! This is bad, you see two floors. Nothing we can do about it. You can try prisms, but better get used to it.” ...Slowly getting somewhere. 

I thought the problem was Podunk health care in rural Vermont. So I went to a highly recommended Big City neurologist. I was hopeful. I am always hopeful... til I get kicked in the gut again. That visit wielded my favorite line: "Your issues are too significant for someone who show no damage on an MRI." Long pause... "Have you seen a psychiatrist?". 

(Everything written about mild TBI says it does not show up on an MRI. How does a neurologist not know that?! I really would like to know the answer to that.)  

The amount of ignorance around brain injuries is shocking. Survivors know it is physical, yet we are treated as if it is psychological. Would anyone with a broken bone have to go through this? Many people with TBI finally end up in psychiatric wards. Although much has been discovered in the last few years, my theory is that our doctors were all trained 10, 20, 30, 40 years ago. They still don't get it. 

Desperate for help, I followed the recommendation and went to a psychiatrist. I was beginning to think maybe I was crazy. 

The psychiatrist said "You have the classic traumatic brain injury. Doctors see you sitting in a quiet office for 10 minutes. They don't see it or understand it. That is so classic! You lose your career, you lose your relationship, you cant’ walk or drive, and doctors don’t believe the severity. They think it is a somatoform disorder. It is a part of every TBI story. You are a mental health professional. You could help others understand this. You should write a book.” (I am.)
                            ___________________


My unsinkable persistence has paid off and I finally have a diagnosis. There are names for this! It really is as hard as it feels. 

After a relentless, nearly five-year, nationwide search, I finally found the right doctor. Dr. Laurie Chaikin specializes in visual rehabilitation after TBI and stroke. She says I have one of the worst, and most complicated vision and vestibular issues she has ever seen. (How did I get so special?) 

Here is the answer to my quest: (If you have a TBI, these names may be helpful to you) 
Drum roll please.......


  • I have Cyclo-torsion,  means my eyes roll around independently on their axis.  
  • I have hyper-deviation, which means when I look left, my left eye moves up and the right moves down.
  • I have reverse hyper-deviation, which means when I look right, the right eye goes up and the left goes down. Going all the way from left to right (to scan a grocery store aisle, empty a dishwasher, or cross the street for example), is really difficult... usually impossible.
  • Exotropia, means that my eyes are pulled apart from each other and are constantly in pain. I see one and a half overlapping images of everything, which is why I could never answer if I see single or double. Conversion, or fusing them together (to make eye contact or read for example), takes a tremendous amount of exhausting work, but is getting easier after years of exercise. My eyes keep scanning and do not ever focus on one spot.
  • Oscillopsia causes everything to appear to bounce. When I walk, there are 2 bouncing floors, one that used to be at my knees and one at my feet.
  • Visual motion sensitivity means if anything internally or externally around me moves, including my head or eyes, I have no idea where my body is in space.  
  • Alpha-omega pupils, mean when the light changes, (like passing trees or columns in the sun) rather than dilating, my pupils get all confused and open/shut/open/shut/open/shut, flickering and making my brain shut down and creating partial seizures. 
  • Central vision allows you to focus and peripheral vision allows you to understand motion and know where you are in space. With a brain injury, they do not communicate with each other as that pathway is broken. Usually, I have no peripheral vision. (It is a bit like looking through binoculars all the time, and if you have ever done that, you know it is not possible to walk down a street easily with binoculars on. You will be sick in no time.)


In short, I have two googly eyes. making me completely seasick and exhausted. According to the Neurosurgeon and PhD researcher, and TED speaker Dr. Uzma Samadani, tracking the motion of the eyes is the best way to detect concussions and other brain injuries that are invisible to radiologic scans. Why was that so complicated?


I can not tell you what a gift it is for an injured brain to finally understand itself! 

Truth is power. Truth sets us free. I am now free of self-doubt, self-criticism, and the anxiety of living with the unknown. Finally, I have something other than quicksand to stand on. I could not stand on falsehoods, but I can stand on Truth. After unraveling enough of the tangled mess of yarn that my brain has become, I can start figuring out how to build a life with what I have left.

If you are dealing with a TBI or any health issue, you need to advocate for yourself. No professional will care about you more than you do. If you can not, ask family, friends, or professionals for help. TBI is primarily a physical problem not a psychological one. If you don't get the answers you need, keep looking!

Never give up. Never give in. This gift of your life is too precious.


video

If you have a TBI, and you have a doctor who gets it, please share their name and location in the comments below, we need to start a nationwide list. Thank you! 

Thank you for putting your comments here on the blog page.




Thursday, March 19, 2015

Collecting Gems

It is so very hard to lose one’s independence at any age. No one ever thinks it will happen to them. Not being able to walk much, drive, or take a bus, I am pretty stuck. I honestly have no idea how to do this. I take it one breath at a time.


Free falling through space on my own, I have been searching for a way to manage this long-term. The system won’t let me in Adult Day Care, I am too young. The swamis won’t let me in an Ashram, I am too disabled. Searching for solutions, I actually did ask both.


My next idea is to search for a safe little town with good weather, that has all I need within a short walk. I have just  flown to a small town in Central California to see if I could function on my own here. The solo adventure itself is daunting. I pack barrels of courage in my suitcase.


Day One:
As expected, three plane rides have shaken me up so badly, that I can barely move or see. My vision has shrunk into a nauseating peep hole and I can’t tolerate moving my eyes at all. The slightest movement of my eyes disorients me and makes me even more seasick than I always am. Information is not traveling from my eyes to my brain. It takes 3 hours to understand my way around my tiny studio. Expanding my world to the patio takes another few hours.


I have no idea how I will get groceries. Even at home, getting food is always the hardest thing for me. The over-stimulation of supermarkets causes my brain to shut down. Somehow, food always finds me when I really need it;  like the Indian saint, Sri Mata Amritanandamayi, who lived blissfully in the woods, and animals and eagles dropped food in her lap when she was hungry.


Today’s  “eagle” takes the form of a friend of a friend, who calls to welcome me to town. “The Farmer’s Market is today, would you like to go?”.  She is a occupational therapist, she gets me. I hold on to her arm for dear life in the visual chaos of the crowd, and unexpectedly, I have produce!


It is magical the way my needs get met, when I never have any idea how they will. I am no longer living a rational life. I am grateful for the gem of kindness.


Day Two:
The Farmer’s Market put me over my stimulation threshold,  and I can’t wake up. I get up once to take a shower which exhausts me so much, I fall asleep again; once to get dressed, which exhausts me so much, I fall asleep again; once to make coffee, which exhausts me so much, I fall asleep again… so much for caffeine. Finally at 2:30pm, I am awake.


Today, I will venture beyond my studio... with the goal to find lunch. There is a cafe four blocks from here. Expanding my world beyond my studio will be a big feat... beyond what anyone without a TBI can imagine.


Concentrating to get through the mental fog, I talk myself through it out loud. “Pull up walking directions on your phone. Study hard to make sure you have a sense of where you are going. Put on the green tinted glasses that relax your brain. Check directions again. Put on the goofy Vibram toe shoes so you can feel the floor. I forgot the directions. Check directions again. Put on the hip belt full of rocks.”


The hip belt reminds me of the confusion and alarm on the airport TSA agent’s face two days before.
“What is this?!”
“It is just rocks.”
“Why are you bringing a fanny pack full of rocks on the plane?!” she accused.
“They remind me where my body is…..I am lost in space and my brain can’t tell..”  


She didn’t know what to do with that.


I only brought one trekking pole on this trip. I need two. I look around the studio. I find a broom stick. I am going out with a trekking pole and ….a broomstick. My life is ridiculous. I am thankful it doesn’t still have the broom on it. That would be an odd picture. But I  would do it with dignity.


I write up a little note, the way I learned in Rehab, “Hi. I have a brain injury and I am lost. Can you please help me get to XYZ address? If you touch my arm firmly, it help me to get oriented to where my body is. Thank you!”.  I make sure it is the page open in my little notebook so I can pull it out (hopefully) when I can’t move, read, or think.


Next, I get dressed up. This too, is a compensatory strategy. If I am relying upon strangers to help me, I don’t want to look like a crazy person. I figure it is better to have them confused by me than scared. “Always look your best, when you go out with a rock belt, toe shoes, green glasses, a trekking pole and a broomstick!”. That is my new motto.


Finally, I walk out the door for the giant four block excursion.


I am so curious to see this town, but I have to be really careful not to look around and waste my little visual processing power. I pick a spot straight ahead and focus intently on it. Every half block, I rest, and hug a tree. Trees keep me grounded, they help me make my way through town. I have hugged so many trees in the last four years, I have learned to listen to them and sense their personalities. I love trees. They have become some of my best friends.


At the cafe, I find it is crowded and noisy, and I am about to topple over.  I can’t stay in this environment. A sweet blonde waitress cuts through the standing room only crowd, and dashes across the room toward me. “Hey sweetie, do you need some help with the menu?”. She puts a firm hand on my arm. I smile, it’s just what I needed: not only a nice person, but one who knew to touch my arm and remind me where my body is… as if she read my note. I thank her for her kindness, and tuck it into my basket of good things from today.


I collect gems like this as I go along. At the end of the day, I look back and admire my basket of sparkling gorgeous jewels that add beauty to my life. It is the kindness of people that fills my basket on a regular basis. It is what keeps me going.


Leaving the cafe, hungry, lost and completely disoriented, I get whistled by a truck full of men. My life could not get any more ridiculous. Maybe my “look good when you carry a broomstick” motto has worked too well. Or maybe sleeping endlessly is the best beauty product ever. Apparently, my outer appearance does not at all reflect my fragmented inner state. This is both a blessing and a curse. I decide to appreciate the compliment, and tuck another colorful gem in my basket.


I find a bakery and buy some bread. Three blocks later, someone tells me that my purse is open and upside down. I had no idea. By now, my vision is incredibly restricted, and I have lost any sense of having a body.


I wonder how much money I have lost.


Grateful for this person, and for having bread, I put two more gems in my basket. My favorite sparkling multi-colored gem today, is the sudden realization that I have come so far with accepting a life without control, that I can now laugh at the mistakes that had me crying for three years straight.


I have learned trust, to stay in the moment, and look for the good. Where attention goes, energy flows. I place my attention on the gems in my basket at the end of the day. When it rains, look for rainbows.


Happiness depends upon gratitude for even the smallest beauties of life.


So what if I was walking down the street dropping all my money. I got bread today!


Day 3:
I intended to visit the Unitarian church service to meet people here. I can’t wake up again. Frustrated and embarrassed, I arrive just  in time for free coffee and food. I decide to forgive myself…. it’s a constant practice… over and over….  I go in anyway, and hope the man I was talking to over pasta salad didn’t notice that I picked up my fork by the wrong end… twice. My hand was gooey with salad dressing. But I have food again. I am doing this solo thing!


I have become one of those people: the people who wander into a church for free coffee and food.
Yep that is me today. This is my new life.


And I love myself anyway.


TBI living has taught me the biggest life lesson of all: to forgive myself and be compassionate with my struggles. I get so frustrated with myself, but I know that does not help me heal or thrive. I express it, let it go, and choose love and forgiveness constantly. I try to send my brain more love with every screw up. Sometimes it works.


Having a scrambled brain that can’t get anything right, you have to laugh at your imperfections and find amusement in the absurdity of life. You have no choice. 
It’s that or jump off a bridge. I choose laughter.


Like most of us, I have been driven by an intense need for perfection and belonging for my whole life. Now,  I have become so imperfect that I have finally realized that it is futile to keep striving for perfection.


I wish I had known that it was futile to try all along.


I wish I had known it was ok to relax and just be me, warts and all. Not only am I imperfect, but I write about it publicly, because I hope it gives life perspective and sets others free too.

I am at peace.  Limitation has never been so liberating.



Sunday, June 29, 2014

I'm Celebrating my Forth Re-Birthday and Sharing my Gifts with You!

It is four years today that I said goodbye to the life I knew.

I woke up at dawn, excited about the day, meditated, wrote, gardened, worked, and looked forward to an evening sailing lesson, never suspecting that after this day, my life would never be the same. No one knows when a traumatic brain injury will strike.

The journey has been intense. Long. Hard. Poignant.

At first, I thought I would heal this. After all, I was a healer. I had spent my life learning about every kind of healing method I could find. I was meant to heal this and teach others how. I could live with that. It gave me hope, and more importantly, it gave me purpose.

Four years later, the part of me that believes that has shrunk.  It has become a little sliver of hope that occasionally surfaces.... and then crashes even harder with the next bad day. Hope has become an unhelpful roller coaster.

Now, I focus not so much on changing this (although it is not my nature to ever stop trying or give up), but I am more focused on how to live a full life, in the present moment, even when things are not as we would want them. Because isn't there always something we which was different?

Honestly, brain injury sucks. It is the hardest, scariest hell anyone can imagine.

But it doesn't help to be thinking that all day.

What helps is to find the gifts our challenges bring us. I have searched and searched for four years for the gifts I knew were somewhere in the rubble. I believe there is always a gift, sometimes they take a LONG time to find.

As my Fourth Birthday present to myself today, I am sharing my gifts.

Gift Number One: Slowing down.
I am a snail in an SUV world. As a snail, I am closer to the rhythms of nature, and the rhythms of my own body. A snail doesn't experience as many things, but it experiences each moment of life with more depth. It isn't racing off to the next experience.

Gift Number Two: Being in the present moment.
Having to work hard to be in my body and have it function, keeps me in a timeless place of right here and now. I am no longer multitasking or distracted and my relationships are richer for it. That is pretty cool.

Gift Number Three: Grace.
What I am finding by being present in the moment, is the gift of divine grace. When we stop approaching life trying to control it with expectations and goals, and just see what each moment brings, doors open. Things happen that could never have been predicted. They often turn out better than I could have thought up myself. The series of surreal events that my life has become would be hard for most people to believe. Life has become a  fun adventure since getting out of the driver's seat.

Gift Number Four: Embracing Uniqueness & Being Self-Referential.
I have difficulty in crowds. I have difficulty reading. I have difficulty with noise or florescent lights. I avoid these things and more, and in doing so have become an island unto myself in the Lake of society. I am learning who I am without outside influences. I am forced to learn to accept being different. The truth is that I have always been "different" and tried to hide that. How many of us suppress our uniqueness and try to fit in? That is a scary thing for most of us. We fear losing love and approval. The truth is, others love us when we are loving ourselves, not when we are trying to be someone else.

Gift Number Five: Freedom from the Curse of Perfection.
As a life-long perfectionist from a family of perfectionists, I used to equate being lovable with being perfect. Yet perfection is an unattainable goal, and that constant drive takes us out of the present moment where peace and self-acceptance lie. Learning to accept all the parts of ourselves, the ones we like and the ones we don't like is the key to peace and wholeness. I can no longer even try to be perfect. Letting myself off the hook, there is the peace of surrender. I feel whole and complete in my brokenness, perhaps more than I have ever felt in my entire life.

Gift Number Six: Becoming my own best Cheerleader.
TBI is a LONG road. It isn't a marathon. It is a lifetime of back to back marathons. I won't survive if I am judging myself and beating myself up. I have trained my mind to be kind to myself, the way you would be to a four year old. After all, I am just four years old in a grown up body. I praise my brain all day. It is doing such a good job. On days like today. I can not tolerate light, noise or motion, and am in my room all day wearing dark glasses, I say "Good brain. You are doing so well. You are working so hard. You are doing your very best. I love you so much!" Repeat. Everyday. All day. Forever.

Gift Number Seven: Learning about love and kindness from people everyday.
I never knew how much a little bit of kindness could help someone in need. I never knew how many beautiful people step forward and rescue others. Wow. This just makes me cry. Y'all are beautiful you know. Thank you so much for the gift of you.

Happy Re-Birthday to Me!

Saturday, May 17, 2014

Angels Are Everywhere

The ironic truth about living with a brain injury is that independence means learning to ask for help. I've learned that toughing it out in an airport and trying to get myself to the gate, never yields a good result. So I was waiting for the wheelchair attendant and hugging my mom goodbye at the curb when emotions came pouring out in a torrential river of tears.


I had been living with my parents for five months this winter, and now I was going home. Being surrounded by family is like having a safety net beneath us as we swing on this crazy trapeze of life. With family around, when I had a vision therapy appointment, and the paratransit vans didn’t show up, I had a ride. When my morning brain-exercise puzzles left me stumped, dad was there to patiently help me figure them out. When my daily 5pm exhaustion hit, and I was too tired to eat dinner, mom's cooking saved me. But now I was leaving the safety net, plunging back out into the world on my own. TBI has been turned my life into a dangerous high trapeze, and living on my own, I fly without a safety net. 


I had been a Daughter for five months, now I had to go home to be a Mother. I wasn’t sure how, and I was up all night wondering. So when the mess of tears met me at the curb, I gave myself permission to loose it. I didn’t care who was looking. I left shame behind. This was too big to suppress, too big to care, and I had had too little sleep. I’ve learned that by letting feelings move through me, they do not last. When I let embarrassment stop that process, I am still dealing with the feelings for a long time. It works much better to feel your feelings and it that area, disinhibition (life without filters) is quite helpful.


When I say I've learned to ask for help, I mean not only from the human world, but from the spiritual world as well. I prayed with all my heart, as I sat waiting, “Please watch over me. I don’t know how to do this and I am scared. Please send me help.Send me lots of help. Send me some angels.Thank you, thank you, thank you!”


A moment later, a tiny Filipina woman, arrived with my wheelchair. Her badge told me her name. Angel. I did a double take. She smiled as she helped me with my bags, not at all fazed by my tears. “Crazy day we are having! 627 wheelchair requests, even my boss is pushing wheelchairs today!” she laughed.


She zipped me through the whirling, swirling hustle and bustle of the airport that amplifies the whirling and and swirling always in my head, making me completely disoriented and nauseous. I closed my eyes behind my dark glasses and worked to stay calm. Angel unhooked the ropes of the security line and started singing “I Did It My Way!” loudly. This was getting more surreal. She hollered at a passenger in the security line leaning on a cane. “Hey, you! You come with me. You don't have to wait. I’ll get you past this line.” Then someone with crutches, and then another cane. Belting out in song “I've lived a life that's full. I traveled each and every highway, and more, much more than this, I DID IT MY WAY!”, Angel pushed my wheelchair, with a gaggle of handicapped people following us to the security agent. She was the Pied-Piper of SFO's disabled. What a sight we must have been!


She delivered me, eyes shut, to he TSA agent, Angel Number Two. “I can do the pat down right in the chair sweetheart. You don’t have to stand up. Does it bother you to lift your legs?” “No.” “Does it bother you to lift your arms?” “No.” “Does it bother you to tilt your head?” “Yes.” “It hurts to tilt your head?” I opened my eyes to look at her. “No, it doesn’t hurt. It makes me more dizzy and disoriented and seasick. I don’t move my eyes or my head.” She looked confused. She had never heard that one. “I have a brain injury” I explained.


She got silent and STILL, the way people often do when you say “brain injury”. They are jolted out of their business-as-usual mode. I can hear their minds grow dead quiet to match mine. She started patting down my legs. “You know, I see these young kids come through here everyday, and they are amazing. They have the best attitude. They inspire me….. Now I am going to use the backs of my hands to pat down sensitive areas….. You are just like them. You are going to kick this thing.” She stopped and looked at me. “You are going to come skipping through this machine next year, yes you are!…. Now let me run my gloves through the scanner." With both of her hands, she held my hand, lowered her face a few inches from mine, and looked right into my eyes. "You are going to beat this! I can just feel it! I just know you are. I believe in you! You are my hero!”.


The TSA agent of all people, had just pierced my heart. Any composure I had regained was completely lost. The floodgates re-opened and there was no stopping them. How did a TSA agent become a therapist and cheerleader for every stranger going through her line? Who are these amazing people?

Tears streaming down my cheeks now, I was being wheeled through the airport by the tiny woman with a huge heart singing songs, and yelling out “Magandang araw!” (Beautiful day!) as she passed her co-workers. 

My daily life is surreal. I started laughing at how my prayers were already being answered. The world was full of angels. I never knew it like I do now.


Angel delivered me to the plane, handing me off to the flight attendant, Angel Number Three. “Do you have any seats closer to the front?” I asked. “I forgot to ask earlier and I don’t tolerate motion well.” The difference between the front and the back of the plane was the difference between a day on the couch recovering or a week on the couch recovering. “Sorry, the flight is full.” My heart sunk. I knew I was buckling myself into Hell. I gulped.


"Can I ask for your help then?" I continued, "I have a brain injury. If there is any turbulence, my brain does not know where my body is space or which way is up. I will be completely out of my body and disoriented.” Now, she slipped into that Quiet Still Place and stopped in her tracks. 

“I only have a half hour layover and when we arrive, I will not know where my body is or how to move it. I will likely not be able to move or talk. Can you please take me by the arm and get me to the wheelchair and tell the wheelchair attendant that I am connecting to Burlington?”. “I will keep my eye on you,” she promised.


I am so grateful that after almost four years, I am learning this new body. I know the drill. I know what I am capable of and what I am not capable of. I am learning how to ask for help and how to work with the new operating system. 

Most of all, I am grateful that I now know I will recover to baseline after the really bad moments, and that makes all the difference between peaceful acceptance and unspeakable terror. 

Being able to first, understand my body; second, understand what it needed; third, not be embarrassed; fourth, ask for help; fifth, not be an anxiety attack about all of it; that conversation spelled major V-I-C-T-O-R-Y!


The plane shook and bounced across the country. I must have been gripping the armrest pretty hard because the man next to me said “I get nervous too.” I couldn’t talk to respond. “You have no idea!” I wished I could say.


I used to get nervous in turbulence, but this was a different kind of fear. This was not anxiety based upon a thought about what might happen. This was the sheer terror of what was happening, like free-falling on a roller coaster you can’t get off of. Like my life depended on it, I stared unblinking at a spot in front of me for my only sense of physical orientation. I didn’t have time to think or care about the plane falling out of the sky anymore, I was too busy surviving each second of this 5 1/2 hour flight. 

This brain injured experience puts me in the present moment all the time. While everyone else is calming reading magazines and watching movies, it takes tremendous focus and concentration, just being in my body.


The flight attendant guided me off the plane as promised, saying “You are going to be just fine!”, before giving me a huge hug. Who gets a hug good-bye from the flight attendant? I did twice this winter.... and an offer to be a free flying companion.


Everywhere I go, there is an amazing display of kindness from strangers. What makes human beings reach out with so much kindness and compassion to people do not know and will never see again? I am so moved by them. They have blown the ceiling off my reality about what is possible in human kindness. They teach me to be as kind as they are. I want to be the strangers I meet. I want to be like that TSA agent.

It is this kindness that makes the world so beautiful and lifts us up when we are down. We don’t hear about it on the news, in fact, we don’t hear about it at all. We pay little attention to it. Yet is there any greater purpose to life?


I am privileged to see a side of humanity that I have never seen before. Never did I think I would be pushed through airports in a wheelchair. That position puts me on the receiving end of random acts of compassion on a regular basis. Back when I was busy racing around on my hamster wheel, priding myself on my independence, I didn’t know this kindness existed; not in the deep profound way I know it now. So I am here to tell you.

Like a Special Ambassador from some foreign place outside of human culture, I am here to report back to you, that people are really beautiful. That life is beautiful, and I am so lucky to be given this vantage point. 

It comes to all of us when we slow down and find the courage to show vulnerability and our humanness. As Brene Brown says, "Perhaps vulnerability is the truest measure of courage".

There is some profound power found in living life in the raw, in not hiding our weaknesses out of shame. It is the place that connects us, human heart to human heart. 

The New Safety Net is here.

It lies in those random members of our human family that show up.

Friday, February 7, 2014

Living Like a Refugee

I have become a winter refugee.

When my TBI first met winter four years ago, the snowfall made my head swirl so badly I could barely walk in my house. Walking outside on the slippery white stuff was completely impossible. My head swirled, my legs stiffened up, my brain unsure of where the ground was. After wall-surfing in the house for a few weeks, with the shades closed getting more dizzy and depressed, I realized I had to get out of here. This stress was not a recipe for healing.

I have never been a big fan of Vermont winters. I grew up in San Francisco, and living in the snow has always felt like a foreign country to me. Five months of it feels like living on a foreign planet. I have never felt comfortable walking on icy sidewalks. So I am not upset about missing out on the winter magic, that is a blessing. But I am upset about leaving my youngest child for a large chunk of the year. That is a painful, heart-wrenching loss.

Every year I question it. Can I stay? Am I just being a winter wimp? I feel guilty. Every year I get a few days of snow to re-confirm that I have no choice. What is it about the white stuff? The ground is white, the sky is white, and I start to stutter and stumble like I did four years ago; my son urging me "Mom, you have to go. I will be ok. Just go!".

This winter, I was determined to test myself and walk a half mile home. I had my trekking poles; I should have been able. Each block got harder and harder. Exhausted, slowing to a snail's pace, and unable to see well, with my visual field narrowing to a pinhole, I refused to give up. Finally only two blocks from my destination, I could go no farther. My brain was so scrambled, I could barely figure out how to call my daughter for help. She found me hugging the street post for dear life, unable to move or figure out where my legs were, and done for the day. "Where are my legs?" was all I could mumble before I fell asleep. I am not just a winter wimp. Every brain injury is different. This is mine.

My theory is that my brain is already working so hard to understand where my body is in space, that winter boots don't offer enough tactile information, while whiteness doesn't offer enough visual information. It is the same in a white room, bathtub, or a bright sidewalk. My broken optic nerve can't translate the visual information to my brain and it is as if I can't see. My brain gets even more strained and every other function just goes to pieces. I do much better in vibrant colors of summer.

My neuroscientist cousin in France immediately understood it and learned about this in her training, but in this country I am treated like I am making this up because I don't like winter. I would love to see the documentation on this and have been unable to find it. Does anyone have it? If so, please add it to the comments below for everyone to share.

It is a strange life I am living. I rent out my home for the winter, and spread myself among my parents and whoever will adopt me. I keep moving, trying not to overburden anyone. I would like to go home. Enough of living out of a suitcase like a gypsy, waiting for it to be safe to return to my life! And what do I do in the long term? Move? This does not appear to be improving.

This brain injury has taught me to take care of myself at a whole new level. It has taught me that nothing, nothing, NOTHING, is more important than health...  which includes emotional health and happiness. Sometimes that means making courageous and unconventional choices with our lives.









Monday, January 27, 2014

Marking Time

It is New Year's Day. (At least it was when I started writing this, so I had better get it out while it is still January!)

Every year of my adult life, I have spent the new year refecting upon the growth of the past year and setting intentions for the upcoming year. At least I did that every year until a TBI twisted my head on differently.

In the chaotic swirl of a brain injured mind, this becomes irrelevant or impossible. Irrelevant because because we have lost a linear sense of time. Time is just now. There is just this eternal moment of NOW. Impossible because when I look back on a year, cutting through the confusing swirl of jumbled memories and making sense or order of them, is like trying to reflect upon the color of a fruit flies eyes while watching a swarm of 500 fruit flies buzz around you. We just can't focus long enough or filter what is important and what isn't.

My New Year's reflections have been missing in a fog for these last three years. So when I sat down to reflect this year, I got a surprise! In another marker that the fog is lifting, I can actually find a theme to last year. 2013. It was my first year of living independently with a brain injury.

I don't know what is more exciting, that I survived a year of independence or that I found the clarity to notice.

2013 truly was a big, scary year, and I made it over this hurdle.
I was terrified to be on my own. How do you survive, let along thrive if you can't drive, ride a bus or train, look to cross a street, walk more than a mile, and have fog for a brain? I live alone with my son, and my family lives 3000 miles across the country.

Everyone I know with a brain injury lives with a spouse or family. I have learned that that safety net makes all the difference between thriving and flailing. I can look and feel downright normal when I am tagging along with someone else who can drive.

By myself, everything feels overwhelming, failures build on each other, I barely leave my house, and struggle with anxiety and depression. Life is simplified to the barest necessities. Getting food is such a challenge, I mostly skip it. You could say it was a failure year because I certainly didn't thrive, or a success year because I survived and am still alive, and I have lost all my TBI weight gain. Maybe the judgement isn't the important part.

Now I know I can survive on my own even though it is super hard. That information is invaluable, that is the important part. Learning about ourselves and accepting ourselves is the important part, not the judgement. Maybe judgement is over-rated.

It's funny how at the end of the year or the end of the day, we look back and judge ourselves. How often do we look at all we did not accomplish in our day? How often do we focus on our failures and miss our accomplishments?

I have learned to count my accomplishments and celebrate every little one. I intentionally focus on what I did do more than what I didn't do, and where I succeeded more than where I failed. Like taking a good photo, life is all about what you focus on. Focus on what lifts your spirits! I am calling 2013 a success.


P.S.  Since I've got my New Year's mojo back, I am also setting an intention for 2014. I hear-by publicly declare that I will have a first draft of my book, "Brainstormed, How I Lost My Mind, and Found My Heart", done by June. It is my story mixed with educational information. It has brain injury, romance, and travel. Think Eat, Pray, Love meets My Stroke of Insight. I have an unbelievable story, the book is coming along, and it is going to be good!
http://www.brainstormedthebook.com/






Sunday, November 10, 2013

Inside those While Vans -Part Two

Last month, an elderly woman boarded the SSTA van and said to me with a sad sigh, “it is so hard being a shut in”.  I looked right at her replying, "I couldn't agree more".

I hate it. It is absolutely crushing to lose once independence. Of all the losses since my TBI, this is hands down the hardest. Being stuck in the house for months and years is like slowly chocking to death. Humans need each other.

Startled out of her emotional state, the woman did a double take and stared at me “Oh my gosh. You are half my age. Why am I complaining?” 

In the conversation that followed, I shared “I have lived more in my first 46 years than most people do in 90. I've already lived a full life." It was a humble sweet moment where two human beings help each other shift from despair over what we don't have,  to finding gratitude for what we do have.

I really have lived a full life already. I have backpacked through eight European countries, spent six months backpacking through Alaska, stalked grizzly bears, kayaked remote islands in Baja, swam with wild sea lions and dolphins, been thirty feet from a gray whale nursing a newborn, rock climbed Yosemite, helped Youth at Risk across the country transform their lives, created an award winning documentary about said Youth at Risk, zip-lined, birthed two children at home, been a single mother, attended forty births as a doula, and as a hypnotherapist, helped  nearly a thousand people live more empowered lives. I intentionally did anything I was afraid of. I wanted to exercise my courage muscles. I was afraid.... and I did it anyway.

I was not on the sidelines of life, I was on the playing field. Now I sit on the sidelines... watching the players on the field. I now face a life where I wonder if I will ever feel comfortable walking down a busy street or traveling again. I miss participating: being able to go to parties, be in a crowd, or a concert, drive a car, ride a bus, travel, kayak, hike, most of all, I miss dancing. So if you're sitting on the sidelines of life, please don't wait. Get on the field! You don't know what tomorrow will bring. There is no time to be putting off living one's life and following one's dreams. 

Being able-bodied is a temporary condition. Whether by illness, disability of death, we will all lose our abilities at some point. Don't take tomorrow for granted.

You too will want to say the elderly woman on the van that you have lived a full life already.